My brain does not feel right

Welcome Greetings and Introductions
1

Hi,

I’m new to this group and have spent a few days reading through some of the threads, which have been very helpful and reassuring. My brain does not feel right. I’ve felt that way at times for the last few years, but in the last several months, the symptoms seem to have compounded and I find that I am spending an equal number of days lying on the couch as I am functioning at a normal (for me) level.

I have had a diagnosis of bipolar disorder for over a decade. I have taken Depakote as well as Topiramate for over 5 years as well as Lithium, Quetiapine, and in the Fall/Winter I have taken Wellbutrin for SAD. I have been titrated off the Wellbutrin and and am currently titrating off the Topiramate. Both, my neurologist and psychiatrist thought were causing my symptoms. So far, the symptoms persist.

My most disquieting symptom is what my GP is calling ‘seizure-like activity.’ For three months I have been having clusters of episodes where I retain consciousness, but lose my ability to move, process information or speak. Once, for example, I was putting away a jar of mayonnaise, and my body and mind began to freeze. I stood there with the jar in my hand, and it was as if I had no concept of what ‘mayonnaise’ was or ‘cupboard.’ In those moments my body feels like a machine slowing down and stopping for 20 seconds to one minute and then I’ll come out of it. Then my head aches like pressure in my skull and my ears. The pain lasts for days or weeks and more of these episodes occur if I keep moving - even the smallest activity seems to provoke them. My body feels weak, I am exhausted and I have to lay down most of the day, because I get vertigo and sometimes nausea and laying down for a while relieves the pressure and I can move again- until the vertigo hits and I have to lie down again. At night I struggle with sleep, with the pain in the back of my head, a sensation of swirling behind my eyes, and that constant pressure in my skull.

Occasionally I experience tinnitus, I notice that I don’t swallow the same way - it’s a strange navigation to get food down and I cough more than I used to. And the beyond the fatigue is the weakness. Like I’ve lost the strength to pick up a small bag of groceries. This last round of episodes was accompanied by the worst headache of my life. It lasted 5 minutes, but made me cry. I’ve also experienced a new sensation of ice cold water rushing over my skull from the back of my head.

I have only just begun seeing a neurologist about a month ago and he ordered an EEG. My GP had already ordered an MRI and CT scan. The EEG was performed when I was feeling well and all of my tests were negative/ normal. The only thing that my neurologist mentioned, in passing, was that I have Chiari 1, but he said it was minimal and dismissed it. He didn’t look at the MRI pictures, he only read the radiologists notes in front of me and my husband. He referred me to a psychiatrist to get my meds adjusted.

There are a lot of posts on this site. It’s very helpful to know I am not the only one who has strange neurological symptoms and been referred to a psychiatrist. I’ve been living with Bipolar a long time, my husband is a wonderful ally for me and helps me see myself clearly when I am losing myself to mental illness. This is not mental illness and we both recognize that. Something doesn’t not feel right with my brain in an entirely different way from mental illness.

I’m having a hard time advocating for myself because I am very tired. Whatever is happening to me is physically exhausting and I’m a perfect world, I would not have to struggle with insurance companies or doctor’s egos to be heard, validated, and recurve quality medical care.

This is not a perfect world. So I’m trying to pace myself, and only do what I can with the energy I have today.

1 Like
2

Hi Kris, glad you found the site. I have learned a lot here, over the years. Just reading about exercises that help and things that make the pain worse, and learning about other treatments and medications people have tried has been a lifesaver. Things I never realized were possibly related to chiari answered questions I had often wondered about my body. And oddly, it helps to know some of these things are “normal” for the condition I have.

There are so many symptoms related to chiari and your dr saying it is minimal is really not accurate. I assume the dr was referring to the size of your herniation when calling it minimal but as most on here can tell you, the size of the herniation does not necessarily correlate with symptoms. My chiari was also brushed aside as my herniation is only 6-7 but then the dr ordered a cine mri which shows the flow (or lack thereof) of your spinal fluid. My dr took my symptoms more seriously then because he could see the disruption and it’s only logical that lack of flow could easily cause symptoms. If you can, ask for the cine mri, it’s one of the better diagnostic tools when assessing chiari.

I do not suffer with the seizure like activity that you talked about (that seems really scary) but I do have the terrible pressure in my head( like my ears are filling up) and the excruciating pain at the base of my head. I describe that like someone has a vice grip on my upper vertebrae and the tighter it gets the more pressure. Often lying down makes it worse, especially on my back. I sometimes sit on the edge of the bed and lean forward slightly with my head in my hands and that gives some temporary relief. Walking makes it worse when I’m having one of these “flares”. Ice at the base of my head and heat on my lower back is a combo that provides some relief.

I also have vertigo sometimes. Really bad episodes cause nausea and vomiting. Another thing that almost always accompanies an episode for me is the clear sound of my heart beating in my head. This usually starts first and then I know the pain will soon follow. I think this has to do with the csf flow. I also have swallowing issues. I have for a long time, even before I was diagnosed, but I had no idea at the time, I just thought it was normal.

Chiari is not an easy condition. There are a lot of things that come with it and the pain can really be debilitating. I have found, over time, certain triggers that bring “flares” on but sometimes I don’t know what causes it. One thing that really helped me was when I started taking gabapentin a couple of years ago. The number of episodes I have has decreased significantly and I think the severity has lessened some, too. I still suffer several times a month but sometimes I can go a couple of weeks and not have a flare so I am grateful for any improvement.

I hope you can get some additional answers. I don’t think what you are experiencing has anything to do with bipolar or any other mental illness.You know your body - trust your gut. See if you can get the cine mri, that may give you some additional answers. I don’t know where you live but maybe look into finding a neuro that deals with chiari patients on the regular if possible. Happy to message with you if you just need someone to vent to. Take care!

2 Likes
3

Hey Kris,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends (along with Sharon).

I wanted to respond to your post because I can see many parallels with my own situation. I had been given all sorts of ‘pseudo-diagnosis’ from mental health to drug and alcohol issues to hypochondria to psychosomatic. In other words “It’s all in your head” little did I know just how real that actually was.
Now, please, do not get me wrong here I am not discreditting psych issues, not at all, but some medicos can revert to a psych diagnosis as a ‘default’ answer ie ‘If it’s not ‘x’ and it’s not ‘y’ then it must be psych…’
I’d been telling the Dr’s ‘Something’s not right…’ I’d have what I call ‘Oddball symptoms’ but they couldn’t find anything. I got on with life and put up with these weird and wonderful symptoms.

So, one day I’m driving down the road and suddenly my sight went funny. I had a super bright light in the corner of my vision. I pulled over called my wife and within 10minutes I couldn’t see. She took me to the dr, who sent me for a scan. returned to the dr the same day and he comes out with the line ‘Ohh, look what we found…’ like it was all something new. I wanted to scream. They found something growing in my head, blocking the flow of fluid. It took over 20yrs for me to finally get an answer.

Now, I MUST agree 100% with @Mel123 in regard to this (especially the 1st line):

If you read through some of the stories here you will find some can have a major herniation with minimal symptoms and yet others can have a very slight tonsil and have no end of issues. It is true that some medicos go solely by length but the reality is that any herniation can cause symptoms.

Now as for what your GP is calling ‘seizure-like activity.’ There are a few seizure types from Tonic/Clonic seizures (aka ‘Grand Mal’) with full on body thrashing with a loss of consciousness/bodily function. Tonic and atonic seizures (aka ‘Petit Mal’) a body tremor often with (but not always) a loss consciousness. There is another known as pseudo seizure, which is lesser again, like a limb tremor. Then there’s a type more often known as an ‘Absence’. These ‘absence’ type are more common in children, BUT these are what it was queried if I was having (as an adult). I seem to have these times when I phase out. The medicos gave me this monitor to wear for a week, problem was within that week I didn’t have an absence, so nothing showed. I have found that often if a Dr can do a scan or a test to show an issue, they can be much more accepting than our own self reporting. But I have had to learn to be my own self advocate. This is happening to me and although they often try to minimise my concerns, if I have an issue I want, no, I NEED them to follow it up. AND I WILL STAND MY GROUND.

I had to get a 2nd, 3rd, 4th and 5th opinion because every medicos view was slightly different. Everything from leave it all alone to operate, but the medicos didn’t know how bad my symptoms were. They didn’t know the impact on me AND those symptoms were getting worse, so to me leaving it all alone was not an option.

My advice: You need a 2nd opinion (and maybe a 3rd, 4th and 5th) and not from a GP but from a neurologist, one with some knowledge in chiari. Some medicos make out they know all about it, but if that was the case why do we have specialists?? You NEED a specialist in chiari, not just a GP.

Please let us know how you get on.

Merl from the Modsupport Team

1 Like
4

Thank you,

These responses are very helpful. I don’t know the mm of my tonsil herniation. The radiologist said the protusion is minimal. I have been to a neurologist, but he is the one who is dismissive of the Chiari, even though he told me I have one. I have no reason to believe he has even looked at my MRI pictures yet. My GP ordered the first MRI and the neurologist almost ordered a second, when I told him I had just had one. He looked up the radiologists notes and deciphered them for us. My husband and I have met with him once, and his next availability is in July.

I’m switching to my husband’s insurance in January, so I’m going to work with this neurologist until then. I pressed him - and my GP, who deferred to neuro- and he has ordered a 72 hour epilepsy study. I agree, it will make no sense to undergo this study when I am symptom free- as I have been having major symptoms for roughly half of each month since September. I’m going to talk to neuro about scheduling the next time my symptoms present.

I don’t mean to go on and on, I just appreciate having a place to share this experience. These last few months have been strange and scary and no one in my life can understand this, through direct experience. I can tell this is a familiar story. I have had a decade already in the medical system with mental illness and I am in a stable place with my bipolar. I have trauma work to do, and am seeking an EMDR therapist. I understand why the doctors would think this is psych. I do have complex PTSD. A large part of that comes from the traumatic ’treatments’ I’ve received in the medical system as much as the inciting events themselves. It is difficult for me to trust doctors, based on many past experiences. To them, it is a job. This is my life. And yes, I do know my body well. I have mental illness, I’m not crazy. I know when I am triggered and I have people I trust who gently reflect to me when I might be losing my ability to see myself. I know this is physical.

Thank you for the support. For sharing your experiences. It means a lot to me.

5

Hey Kris,
PLEASE DO NOT, DO NOT be apologising for going ‘on and on’. I cannot tell you how many times I have gone over and over and ov… the same things in my own head (no pun intended). This is stressful and anybody who tells you otherwise has never been in this position. As for the medicos, some try to minimise it all with the theory that the less the patient knows, the less they will stress about it all. Well, that theory couldn’t be further from the reality we live with, especially when we’re symptomatic. So, please don’t be apologising. I’ve often used a very simple example of a medical diagnosis of A+B=C or Symptom ‘A’ + Symptom ‘B’ = Diagnosis ‘C’, but that’s way too simple for me. For me it’s more like A+B-C/DxE√F… and every one of them is variable, there is nothing ‘simple’ about it all, no matter what the medicos think.

Similar to yourself, I too have been given a mental health diagnosis and this has regularly been identified as ‘Ohh but you have a history of…’ But I also have a history of dealing with medicos who think they know-it-all and they have been proven wrong, repeatedly. It was easier to label me ‘Crazier than a box of frogs’ than to actually investigate. It wasn’t until it became an emergency situation that a true diagnosis was established. You know your body better than anybody, don’t let them minimise your concerns.

As for the MRI’s, there are a few differing types. The magnets in the machines are rated in ‘T’ or tesla, in VERY basic terms 1.5T can show bone and tissue, 2T can show fluid and 3T can show the flow of fluid. So, although your GP may have ordered an MRI, not all MRI scanners are the same and as @Mel123 states a cine wave MRI scan can better show chiari. Me, personally, I have major issues with fluid flow and I have been told my scans need to be a minimum of 3T to show that fluid flow. I’m in Australia and here certain dr’s (GP’s) have authority to order basic scans, where specialists can have the authority to order specific, more specialised scans such as a sine wave scan.

We are always here if you need.

Merl from the Modsupport Team

1 Like
6

Hi. I have only a 1mm herniation. Symptoms began at 9 PM on 11/20/2003. I stood up from the couch to go to bed and vertigo hit and never went away. 24/7. In all positions. After a month, my doctor ordered an MRI. Normal results. I became nearly bedridden with so many debilitating symptoms. I was gaslighted by doctors and family and ended up all by myself for months. My son had to go live with his dad, my fiance left, my parents and siblings insisted it was mental illness and thought I just needed tough love. I went from being very much independent to almost helpless in an instant and the losses that followed (home, career, family, fiance, I had to give my animal away) caused severe depression. I was admitted to behavioral health twice in the first few months after onset of symptoms because I was suicidal. Who wouldn’t be? It was not only physical torture, it was emotional torture not having any support. I was horrified at the thought of being homeless in that condition and my family warned me that that’s what would happen if I lost my home. I spent the next two and a half years researching and read about Chiari many times and dismissed it because my MRI was normal. Then, I found Dr Daniel Heffez. He understands the significance of a minimal herniation. He almost couldn’t find mine on my MRI, but he did and I flew to see him. He ordered a CINE MRI to measure cerebral spinal fluid flow and my flow was almost completely blocked. He ordered a spinal cord function test in which I showed deficits and performed a thorough neural examine which revealed some cranial nerve deficits. After that, he recommended surgery. He said it was way worse on the inside than it looked on MRI. So you see, an MRI is only part of the picture. Ask for a CINE MRI. Your symptoms are so close to what mine were except I think mine were a little more severe because I could hardly do anything for months. I took a shower every 5 days but it was incredibly taxing but I had to do it because I couldn’t even stand myself after 4 days. Anyway, Dr Heffez told me over the phone, before I sent him my MRI, that my symptoms were too precise to be anything else, in his experience so I’d be willing to bet that it is Chiari causing your symptoms.

1 Like